Status
Not open for further replies.

northerngirl

Distinguished member
Joined
Jan 9, 2008
Messages
106
Reason
Lost a loved one
Diagnosis
11/2007
Country
CA
State
BC
City
Kootenay
The ALS clinic forward this letter to me for mom today.

apparently they had a Canada ALS center confrence call Monday on how to deal with it and start studys.

She see's her GP tomorrow, Wish us luck!


Feb 7, 2008

As you may be aware, a study has just been published demonstrating a positive effect of the drug lithium carbonate in ALS. The drug was studied in 16 patients with ALS (who took lithium and riluzole) and these patients were compared with a similar group of 28 ALS patients who took only riluzole. The patients were followed for 15 months. During this time, the disease progressed significantly more slowly in the patients on lithium and riluzole compared with the patients on riluzole alone. At the end of 15 months, 8 patients treated with riluzole alone had died. No patients treated with the combination of riluzole and lithium had died.

What does this mean for you? This is only one study and it is a small study so we cannot be sure that lithium works in ALS. In general, scientists like to see data replicated at a separate site to be convinced that the data is definite. Nevertheless, given that the current study seems to be reasonably well designed and that the benefit seems to be significant, I think it is important that you are aware of this and that you be offered the opportunity to go on lithium if you choose.
What is lithium carbonate? Lithium carbonate is an old medication that has been used to treat bipolar disorder (manic depression). The dose used in this study was 150 mg twice daily with a goal blood level of 0.4-0.8 mEq/liter. In patients whose blood levels were less than 0.4 at this dose, the dose was increased to 150 mg three times daily. These doses are lower than those typically used in bipolar disorder. Nevertheless, you need to be aware that there are potential adverse effects. The levels need to be monitored very closely as severe toxic reactions can occur at levels of 2.0 mEq/L or greater. Kidney problems, dehydration or concurrent use of a diuretic medication can all increase lithium levels so, if you choose to go on lithium, you will need to have regular bloodwork to monitor your kidney function and you will need to insure you have adequate fluid intake to avoid dehydration. However, at the blood levels used in the study, the side effects of lithium, if any are usually mild and tend to resolve with time. Your doctor can discuss this further with you if you might wish to go on the medication.

If you would like a copy of the article, you can access it from the journal website free of charge:

http://www.pnas.org/cgi/reprint/0708022105v1

If you want to consider going on lithium, please either call the ALS Centre or your GP to make an appointment to discuss this. Although it will be easier for many of you to do this through your GP, it is likely he/she is not aware of this study. Therefore, I would recommend you bring a copy of this letter and the article to your GP appointment. If you do decide to go on lithium and it is prescribed through your GP, I would encourage you to let us know and to make a followup appointment with us, if not already scheduled, so that we can monitor how you are doing.
 

northerngirl

Distinguished member
Joined
Jan 9, 2008
Messages
106
Reason
Lost a loved one
Diagnosis
11/2007
Country
CA
State
BC
City
Kootenay
Creatine

PS they are not recommending creatine with lithium because both are hard on your kidneys and you need to drink so much water with creatine.

They said coq-10, Vitamine e, Lots of B12 are all acceptable for maintenance (not cure).
 

ilgal

Active member
Joined
Jul 28, 2007
Messages
83
Reason
PALS
Diagnosis
00/2001
Country
US
State
IL
City
Somewhere
I think this is great! Thanks for sharing.
 

JustMe

Active member
Joined
Dec 29, 2006
Messages
35
Reason
PALS
Country
US
State
Pennsylvania
City
Harrisburg
How Nice That Is


OK - not to rant, but - - - - - - -

It is really wonderful to see this kind of on-top-of-it action from the ALS clinic up there in BC. What I want to know is WHY have all of us down in the US not gotten a similar message from our local ALS clinic / association?

I just emailed my neuro to request being put on Lithium therapy - really curious to see what kid of answer I get.

Roy - - - - JustMe
 

Al

Moderator emeritus
Joined
May 25, 2004
Messages
7,960
Reason
PALS
Diagnosis
10/2003
Country
CA
State
On
City
NW of Toronto
The ALSA has a large part of the front page of their website dedicated to the Lithium trial they are supporting. Might take a bit of time to notify each chapter and get them to get the info to each Neuro and patient. Guess that's why they call us patients, because we need to be patient.
AL.
 

CindyM

Moderator emeritus
Joined
Sep 17, 2006
Messages
3,543
Reason
Learn about ALS
Country
US
State
New England
City
Anytown
Patient? Me?! Never happen. Just ask my family, LOL! :-D
 

Montana Carol

Active member
Joined
Jun 22, 2007
Messages
85
Reason
PALS
Diagnosis
06/2007
Country
US
State
Montana
City
Corvallis
My ALSA Chapter Notified Me

Yes, the same day I read ZenArcher's post about the lithium trial, I got an e-mail message from ALSA-Evergreen Chapter in Kent, WA telling about it. I've printed out the detailed article and the e-mail message and given them to my neurologist, and now I'm waiting for him to get back to me with a prescription.
 

northerngirl

Distinguished member
Joined
Jan 9, 2008
Messages
106
Reason
Lost a loved one
Diagnosis
11/2007
Country
CA
State
BC
City
Kootenay
Yes lithium, no riluzole

Mom Stared last night on her lithium. A little note mom has chosen to not do riluzole. I have no Idea if the drug work together or if it is just the lithium. She had a bad night worried about side effects. which should be little or none at such low dose. At higher doses I read it could take 3-4 days to get use to it.
 

Tall John

Active member
Joined
Mar 30, 2007
Messages
81
Reason
PALS
Diagnosis
06/2007
Country
US
State
ca
City
novato
Do both

The point of the Italian study was to take them together.

Good piece on the Packard site.

Went for my check-up at UCSF on Monday, they're worried that the study was small. My take is that after the Minocycline fiasco, everyone is gunshy. Also, they didn't want to keep checking my blood.

Printed stydy from PNAS, went to GP Tuesday, started Lithium same day.
 
Status
Not open for further replies.
Top